It is finished. We had another great day yesterday. It wasn’t until we got home yesterday that I felt exhausted, but we are so very happy. I want to tell you that there were so many miracles that came together for this CD. I was so sick all month and it didn’t seem possible, but the day before the studio time I started to feel better. There were many great things said and done while we were in the studio. We had so much love and support from many friends. The team that helped my music sound amazing was respectful and kind and thoughtful to me.
If I could share one word, it would be hope. It is what I feel, but I think, most of all, the people who have been involved in helping my music be heard feel hope too. I am not any more amazing than the next person. I did what I was asked to do. I didn’t know when I started to compose with Karen ten years ago that my life would change dramatically. I said yes to God and He has done the rest. I would never have allowed myself to dream this big. I could not have made this happen. My mom and family could not have made this happen. But because I said yes, this world is changing.
I hope it changes most of all for girls with Rett Syndrome. We need to be seen as human beings who have capabilities, who have thoughts, who have hopes and dreams. We are more than people who create great struggles for our families. We are more than people who cost society money. We are here to contribute in our own unique ways to this world. I know that every person was created with something special and unique to them, but it’s only when we have the right support around us that these gifts can be shared. Part of our struggle is being believed at all. I get so sad for the girls who listen to their families speak of their disorder as devastating and awful and use words like suffering. If that’s how we are seen by others, it’s hard to live a bigger life.
Please check out a story that a reporter wrote about me in our local paper:
I want to thank her here for making some changes to the story at my request. One of them was she said that I suffered from Rett Syndrome. I told her I live with Rett Syndrome. I choose not to suffer. I am who I am and I can’t change Rett Syndrome, but I choose to live. I choose life every day even when I am sick like I have been most of this month. I am glad for life. While I am here I will do whatever I can to help others become more aware. The girls with Rett Syndrome live the lives they are allowed by others to live. It isn’t the life we would have chosen, but many wonderful things happened in my life and I am so very happy for them.
Thanks to my family and my wonderful sister Leah I have been given a new voice in this world through my music. I have not been an easy sibling to live with for Leah when she was young, so to have her involved in helping this dream of my music getting recorded come true is beyond words. I love her so very much. I couldn’t have done it without her. She is so selfless. Her viola makes my music sound the way I want it to. I know you will love it. I send you peace.